Autoimmune Encephalitis Alliance
Ellen Whittington was 12 years-old when she was first diagnosed with autoimmune encephalitis in 2012. At that time, she couldn’t talk or feed herself. Now, 17 year-old Ellen is a high school student and doing much better. Her family was interviewed by local NBC affiliate WRAL, as an update to their original story. Ellen and her family were […]
March 22, of each year is Brain Injury Awareness Day. This year’s theme is “Not Alone.” While autoimmune encephalitis is not what most people consider a “brain injury,” the damage done by the disease can be similar. “I have been told by several world-class physicians who focus on AE, that recovery, and in particular the […]
The Journal of the American Medical Association Nuerology reports the following by authors Volker Behrendt, MD1; Christos Krogias, MD1; Anke Reinacher-Schick, MD2; Ralf Gold, MD1; and Ingo Kleiter, MD1: Anti-NMDAR autoimmune encephalitis, associated with ovarian teratoma, predominantly affects young females.1 Because antibodies against subunits of the NMDAR contribute to the pathogenesis, methods targeting humoral immunity are therapeutically efficacious.2 However, some patients have an unsatisfactory outcome after high-dose corticosteroids, apheresis […]
Two U.S. non-profits join forces to combat autoimmune encephalitis. “The AE Alliance is proud of the long-standing relationship with the Hashimoto’s Encephalopathy SREAT Alliance. We are grateful beyond words for HESA’s generosity. This collaboration allows both groups to look anew at imaginative ways to raise awareness on all autoimmune encephalitis fronts, fight this disease, and […]
Science Direct has published an article by authors van Sonderen, M.W.J. Schreurs , P.W. Wirtz , P.A.E. Sillevis Smitt, and M.J. Titulaer that a wide variety of clinical syndromes has been associated with antibodies to voltage-gated potassium channels (VGKCs). Six years ago, it was discovered that patients do not truly have antibodies to potassium channels, but […]
Smashing windows, self-harming, and shaving her own hair, Sarah Galloway had to be placed in mental hospital before doctors could determine her illness. ChronicleLive reports on a 22 year-old woman who fell ill with autoimmune encephalitis as she was about to enter her final year of university. Click here to read the full story. We wish Sarah […]
Medpage Today reports that the FDA has approved the biologic drug ocrelizumab (Ocrevus) for treatment of relapsing forms of multiple sclerosis. Ocrelizumab is an anti-CD20 monoclonal antibody targeting B cells which is the same mechanism of action as rituximab (Rituxan), which some earlier studies found to be effective against both relapsing-remitting and progressive MS. Off-label use of rituximab […]
Duke Health recently posted an article by Carol Habers that follows the four-year journey to an autoimmmune encephalitis diagnosis of Lucas Quinones-Reed. “Reed, Quinones, and Lucas met with Dr. Heather Van Mater, MD, a pediatric rheumatologist and Dr. William Gallentine, DO, a pediatric neurologist. ‘They came in with a box full of medical records,’ said Van Mater. Immediately, she saw […]
The following was sent to us by Erin Wicke Dankert to honor her mother Rita. “My family has been very open with my Mom’s experience in hopes of helping others with this condition.” AEA is so appreciative of this personal sharing by all who loved Rita. In March, my family suffered the devastating loss of […]